Resource List for Parents
Autism and Development Disorders
Started by a woman whose son was diagnosed with autism, Autism Highway is both informative and fun. The website is easy to navigate and it provides an extensive list of autism-related events and specialists. In addition, Autism Highway includes interactive games for kids.
Autism Navigator is a collection of web-based tools and courses developed to bridge the gap between science and community practice. They have integrated the most current research into an interactive web platform with video to illustrate effective evidence-based practice. The video clips come from the rich library of video from federally funded research projects at the Autism Institute at Florida State University.
The Autism Research Institute focuses on researching the causes of autism, as well as developing safe and effective treatments for those currently affected by the disorder.
The Autism Society is a grassroots autism organization working to increase public awareness about the day-to-day issues about people across the spectrum, advocate for appropriate services for individuals of every age, and provide the latest information regarding treatment, education, research, and advocacy.
Autism Speaks is an autism awareness, science, and advocacy organization. The website provides a comprehensive resource guide for all states. The 100 Day Kit for Newly Diagnosed Families of Young Children was created specifically for
families of children ages 4 and under. Visit Autism Speaks to see their comprehensive listing of autism websites for families.
A free social network for parents of kids with autism. With over 30,000 parents registered on the site, you can find parents just like you based on where you live, the age of your child, your child’s sub-diagnosis and developmental needs, and gender. Parents share tips, support, and photos, as well as ask and answer each others’ questions. In addition, there is a searchable provider directory of over 35,000 autism specialists and autism-friendly providers constantly updated by parents on the site. MyAutismTeam is the official social network and resource guide for Autism Speaks.
National Professional Development Center on Autism Spectrum Disorders
The National Professional Development Center on Autism Spectrum Disorder (NPDC) has worked to develop free professional resources for teachers, therapists, and technical assistance providers who work with individuals with ASD. Resources include detailed information on how to plan, implement, and monitor specific evidence-based practices.
Organization for Autism Research
OAR’s mission is to apply research to the challenges of autism. The organization uses science to address the social, educational, and treatment concerns of self-advocates, parents, autism professionals, and caregivers. In addition to funding research, OAR disseminates new and useful information to as many members of the autism community as possible and directs all research and programs initiatives toward enhancing the quality of life for individuals with autism.
Sesame Street and Autism: See Amazing in All Children
Sesame Workshop created Sesame Street and Autism: See Amazing in All Children, a nationwide initiative aimed at communities with children ages 2 to 5. Developed with input from parents, people who serve the autism community, and people with autism, See Amazing in All Children offers families ways to overcome common challenges and simplify everyday activities. The project also fosters an affirming narrative around autism for all families and kids.
The Asperger/Autism Network (AANE) provides individuals, families, and professionals with information, education, community, support, and advocacy
The Boone Fetter Clinic is part of the Autism Speaks Autism Treatment Network and DBPNet. These affiliations enable our team to participate in new and innovative autism research projects. Because of this research, we can offer your child the most promising new therapies.
Balance and Vestibular Disorders
Boys Town National Research Hospital
Hearing and Balance
Discover how ENT-related conditions are connected to various areas of the ear, nose, and throat.
The American Hearing Research Foundation serves two vital roles: to fund significant research in hearing and balance disorders, and to help educate the public about hearing loss and balance disorders related to the inner ear.
The Ménière’s Society is the only registered charity in the UK dedicated solely to supporting people affected by dizziness and balance problems caused by vestibular disorders.
Educational and Disability Resources
American Speech-Language-Hearing Association (ASHA)
ASHA is the national professional, scientific, and credentialing association for audiologists; speech-language pathologists; speech, language, and hearing scientists; audiology and speech-language pathology support personnel; and students. On the ASHA website you can find an overview of Autism Spectrum Disorder as well as specific information about ASD for speech-language pathologists.
California Department of Developmental Services
California Department of Special Education
Center for Parent Information and Resources (CPIR)
The Center for Parent Information and Resources (CPIR) serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs). The Parent Training and Information Centers (PTI) found in every state are a rich source of information and training tailored for parents, including parents whose primary language is not English or themselves have special training needs. In addition, Community Parent Resource Centers (CPRC) throughout the country serve targeted, underserved communities. To find the PTI or CPRC that serves your community, go to the Center on Parent Information and Resources.
Early Childhood Technical Assistance Center (ECTA)
The Early Childhood Technical Assistance Center (ECTA), located at the University of North Carolina at Chapel Hill, supports the strengthening of state and local service systems to ensure that children with disabilities and their families receive high-quality, evidence-based, culturally appropriate, and family-centered support and services.
The IRIS Center, funded by the Office of Special Education Programs and based at Vanderbilt University and Claremont Graduate University, creates and disseminates resources about evidence-based instructional and intervention practices for preservice preparation and professional development programs. See the Autism Spectrum Disorder self-guided training modules for teachers.
The Center on Technology and Disability. The Center is designed to increase the capacity of families and providers to advocate for, acquire, and implement effective assistive and instructional technology (AT/IT) practices, devices, and services. Research-based technologies have great potential to help infants, toddlers, children, and youth with disabilities participate fully in daily routines; have increased access to the general educational curriculum; improve their functional outcomes and educational results; and meet college- and career-ready standards.
The National Association of Special Education Teachers (NASET)
NASET is a national membership organization dedicated to supporting teachers in the field of special education. NASET offers a rich library of information on a wide range of ASD topics, as well as the publication, Autism Spectrum Disorders Series.
Federal agencies and federally funded organizations
The U.S. Department of Education
When your child enters public school, he or she has rights under federal and state laws. The U.S. Department of Education has information about federal laws and state laws. The Department’s Office of Special Education Programs (OSEP) supports projects that provide information and technical assistance to families of infants, toddlers, children and youth with disabilities. Families can also find a wealth of information about the Individuals with Disabilities Education Act (IDEA) at OSEP’s IDEA website https://sites.ed.gov/idea/The website contains the full text of IDEA and the regulations, as well as guidance documents and a wide range of other resources.
Wrightslaw Special Education Law and Advocacy
A great site for accurate, reliable information about special education law, education law, and advocacy for children with disabilities. Early intervention is invaluable because it links parents to services in the community, but it can be hard to find services without a long waiting list. Families can search on their own for providers using the Wrightslaw Yellow Pages for Kids With Disabilities.
Finding Mental Health Support
Anxiety Disorders Association of America
California Association of Marriage & Family Therapists
CAMFT and Counseling California provide a broad search tool for finding a therapist, including insurance type.
California Department of Mental Health Search for Providers
Deaf Therapists treating Deaf Patients
Department of Health Care Services in California
Adult and children’s mental health services
Didi Hirsch Mental Health Services has provided free mental health, substance use disorder and suicide prevention services since 1942. Dedicated to serving communities where stigma or poverty limits access, Didi Hirsch helps more than 150,000 children and adults from 10 locations and 100 schools throughout Los Angeles and Orange counties each year.
General California Mental Health Connections by County
Grief and loss support within Los Angeles County
Meditation and Mindfulness Membership
Mental Health America (MHA)’s work is driven by its commitment to promote mental health as a critical part of overall wellness, including prevention services for all; early identification and intervention for those at risk; integrated care, services, and supports for those who need them; with recovery as the goal.
Psychology Today Provider List
Referral list via Psychology Today for therapists that accept Medi-Cal in California
Psychology Today Provider List, select your own criteria
The National Council for Mental Wellbeing
Certified Community Behavioral Health Clinics locator to support mental health, search by state. Designed to provide a comprehensive range of mental health and substance use disorder services to vulnerable individuals. Medicaid providers.
General Vestibular Support Groups:
These are Facebook support groups directed towards any kind of vestibular dysfunction.
- Vestibular Disorders Support Group
- Vestibular Hope– Search for the group on Facebook
- Vestibular Voices of Care– Facebook support group for family and friends of vestibular patients only
Genetics and Additional Pediatric Professional Associations
ACMG – American College of Medical Genetics and Genomics
A Parent’s Guide to Hearing Loss
National Society of Genetic Counselors Special Interest Group
Professional Associations – Pediatrics
National Crisis Resources
American Foundation of Suicide Prevention
800-273-8255 or text “TALK” to 741741
Call 211
If you need assistance locating long-term mental health resources, talking through a problem, or exploring mental health treatment options, call 211 to speak with a live person who can help.
Ability to chat online with crisis centers across the United States.
Mental Health America Crisis Line
1-800-273-8255 or text “HOME” to 741741
Connects callers with trained crisis volunteers who provide confidential support, advice and referrals if needed. Another is Mental Health First Aid, for children and adolescents. Text “MHFA” to 741741.
National Suicide Prevention Lifeline (24/7)
1-800-273-TALK (1-800-273-8255)
Crisis hotline for individuals or families interested in mental health referrals, not just suicide.
SAMHSA’s National Helpline (Substance Abuse and Mental Health Services Administration)
1-800-662-HELP (4357). SAMHSA’s National Helpline is a free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing mental and/or substance use disorders.
TeenLine (Cedars Sinai Medical Center)
Do you need help working something out? Do you want to talk to someone who understands, like another teen? We’re here to help! Call (310) 855-HOPE or (800) TLC-TEEN (nationwide toll-
free) from 6pm to 10pm PST. Text “TEEN” to 839863 between 6:00pm-9:00pm PST to speak with one of our teens (Text STOP to opt out).
Call 866-488-7386 or text “START” to 678678
Trained counselors, 24/7, to support youth in crisis, specialized in LGBTQI community.
Call 1-877-565-8860
Neuro Specific Resources
Support groups, community support, caregiver support, education.
American Association of Neurological Surgeons
Developed by neurosurgeons, this resource provides patients and their families trustworthy information on a wide range of neurosurgical conditions and diseases. Learn about disease and injury risk factors, symptoms, diagnosis and both surgical and nonsurgical treatment options.
American Brain Tumor Association
The mission of the American Brain Tumor Association is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis.
American Childhood Cancer Organization
American Psychosocial Oncology Society
American Society of Clinical Oncology
Association of Oncology Social Work
Bear Necessities Pediatric Cancer Foundation
A program built for patients and caregivers. It is an online navigator to help them understand, manage, and cope with all the twists and turns of a brain tumor diagnosis. It includes timely articles from the scientific and personal perspective, more than 200 videos of physicians, caregivers, and patients sharing their stories and resources developed to ease some of the journey through treatment. Brains for the Cure connects the brain tumor community to let those fighting know they are not alone.
The Brain Tumor Network (BTN) is a navigation resource for adult patients and caregivers in the United States seeking information about brain tumor treatment options including clinical trials. This unbiased resource is provided at no cost to patients, caregivers, or healthcare professionals.
Center for Cancer Research (NCI at NIH)
HelpDesk@childrensoncologygroup.org
Collaborative Ependymoma Research Network
The CERN Foundation is committed to improving the care and outcome of people with ependymoma through community support and research efforts. The CERN website is dedicated to informing patients and caregivers about treatment, diagnosis, clinical trials, symptom management, and recurrence. It is a valuable resource for those affected by ependymoma, including patient stories.
CureSearch for Children’s Cancer
1-800-458-6223 – info@curesearch.org
The EndBrainCancer Initiative is enhancing patient outcomes by expanding FDA-approved treatment modalities and fueling research in the pharma/bio/life sciences, device and diagnostic industries and by closing the existing gap from initial diagnosis to immediate and expanded access to specialists, researchers, advanced and innovative treatments, clinical trials and critical care with the ultimate goal of improving patient outcomes through updating and improving WHO and NCCN Guidelines and clinical practices related to standard of care for brain cancer patients.
Epidermoid Brain Tumor Society
The mission of Epidermoid Brain Tumor Society (EBTS) is to inform, educate, support and fund research for those affected by the epidermoid brain tumor. EBTS Facebook support group
Native American Cancer Research
National Organization for Rare Disorders
Neuroendocrine Tumor Research Foundation
Psychosocial Support (including support groups and peer matching)
Neuroscience for Kids: Dr. Chudler’s Primer Identifying Cranial Nerves
Chart and activities to learn more about cranial nerves.
Pediatric Brain Tumor Foundation
The PNA is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.
Resources, support and referrals. NCI-CONNECT Rare Brain and Spine Tumor Network.
Support for People With Oral and Head and Neck Cancer
Education, support groups and resources for patients and caregivers.
Non-Profit Organizations Providing Support for Other Hearing and Vestibular (Balance) Challenges
AG Bell
Here at AG Bell we are working globally to ensure that people who are deaf and hard of hearing can hear and speak. We are here to provide support, information, resources and more to help guide you on your journey.
Described and Captioned Media Program
Families and educators who have at least one student with a disability can register for free membership and access thousands of accessible, educational videos.
Teachers can 1) share videos using apps like Zoom, 2) create Student Accounts to assign videos, or 3) embed videos in LMS like Google Classroom.
Hearing First – Parent & Professional Support for LSL
Listening and Spoken Language (LSL) has opened up a world of possibility for children who are deaf or hard of hearing. With LSL intervention and the right hearing devices, children with hearing loss are listening, talking, learning, and reading just like their hearing friends and siblings.
National Institute on Deafness and Other Communication Disorders
Online Resources for Support and Information
A.G. Bell – Newly Diagnosed Parent Hotline
Alexander Graham Bell Association for the Deaf and Hard of Hearing
Here at AG Bell we are working globally to ensure that people who are deaf and hard of hearing can hear and speak. We are here to provide support, information, resources and more to help guide you on your journey.
American Cochlear Implant Alliance
The mission of the American Cochlear Implant (ACI) Alliance Foundation is to advance access to the gift of hearing provided by cochlear implantation through research, advocacy and awareness.
American Pregnancy Association
American Society for Deaf Children
Since 1967, ASDC has been supporting parents of children who are deaf and hard of hearing. We believe that deafness is not a disability, but language deprivation is. That’s why it’s our mission to ensure that every deaf child can learn sign language from the very start.
American Speech-Language-Hearing Association
Parenting a child who is deaf or hard of hearing
Center for Disease Control – Cytomegalovirus
CMV Section
College Guide for Deaf and Hard of Hearing Students
Deaf and Advocacy Services (Northern California)
Deaf Education – part of Hands and Voices
Sign up for Disability Scoop’s e-mail news to receive the most current updates on developmental disabilities. Disability Scoop’s experts have been cited by multiple online news sites.
EBS Healthcare is a unique company that began as a non-profit organization founded by special education directors more than 30 years ago. We have remained the global leader of birth to 21-year-old programs and the largest provider of services for the pediatric population. EBS is dedicated to empowering clinicians to become leaders in their fields, while providing the highest-quality services for families and communities around the world. Our mission is to make a difference in every life we touch every day.
Ear Peace Save Your Hearing Foundation
Ear Peace Foundation is an educational nonprofit dedicated to raising awareness among young people about the epidemic of Noise-induced Hearing Loss (NIHL) and its simple prevention. One in five U.S. teenagers has permanent hearing damage by the age of 19, most due to recreational noise exposure. Ear Peace Foundation works collaboratively with families, educators, and other professionals to provide information and free curriculum materials about NIHL and hearing safety including a 30-minute classroom lesson that can be presented in-person, virtually, or completely online.
Educational Audiology Association
Family Resource Centers Network of California
415-282-7494
Family Voices of California is a statewide collaborative of parent-run centers working to ensure quality health care for children and youth with special health care needs.
Greater Los Angeles Agency on Deafness, Inc. (GLAD)
Provides support to help advance the life of deaf and hard of hearing individuals by empowering them with information, training and opportunities.
We are parents of ASL signers, cued speech users, parents of kids with cochlear implants or total communicators, we are people who have common interests connected through the community of deafness. Hands & Voices is a safe place to explore options, get unemotional support (although we can be emotional about it!), learn from one another and share what we have in common. We value diversity and honor the role of parents and family as the single greatest factor in raising a WASK: W ell- A djusted S uccessful K id)
Hands and Voices D/HH Parent Facebook Group
Every Day, Children with Hearing Loss are Learning to Listen, Talk, and Thrive. Leaders in LSL training and parent support.
Joint Commission on Infant Screening
Hearing Loss Association of America
At Hearts for Hearing, we change the lives of children and adults through the attention we provide to identify each individual’s unique hearing needs, our innovative, evidence-based solutions, and our family-centered support. While some view hearing loss as a condition that separates people from their loved ones, we seek to restore hope and opportunities.
Joint Committee on Infant Hearing
The mission of the Joint Committee on Infant Hearing is to address issues that are important to the early identification, intervention and follow-up care of infants and your children with hearing loss.
Minnesota Department of Human Services
National Center on Deaf-Blindness
National Center for Hearing Assessment & Management (NCHAM)
National Congenital CMV Disease Registry
Cleft Palate
Ototoxicity
A service of the non-profit Organization of Teratology Information Specialists (OTIS), is the nation’s leading authority and most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding. We specialize in answering questions about the safety/risk of exposures, such as medications, vaccines, chemicals, herbal products, substances of abuse, maternal health conditions and much more, during pregnancy or breastfeeding. Our no-cost information service is available to people who are pregnant and/or breastfeeding, their family members, health professionals, and the general public via chat, text, phone, and email in both English and Spanish.
Polymicrogyria
Regional Center of Orange County (California)
Related Vendors for the Consumer
Cognitive impact of hearing loss
Wireless services, recommendations and resources for disabled, veterans and elderly.
Rather than creating a new device, HeardThat makes the hearing devices you already own work better, simply by using your smartphone.
Bone conduction, CI, hearing aids
These Facebook Support Groups are communities for people with specific diagnoses
Please let me know if you have a favorite website or mental health practitioner to share: dsands@hifla.org or 213-770-2187 ext.105
Thank you!!
